It has been a roller coaster of a ride, emotionally, physically, spiritually. One of the hardest things is watching a loved one suffer without really being able to help. But we have made it this far and it is a miracle. I am so proud of Josh right now, he is an amazing young man. This hasn't really been 6 months of suffering for him, but 10 years of suffering. He has always been itchy, its all he has ever known. Yes, this past few months of TSW has been especially trying, but we realize that he has been through TSW once before when he was 2 years old. We just didn't know what it was at the time, or that the steroids had caused it.
When he was 2 we went through an elimination diet to find allergens. We had to stop the creams and anti-histamines to do this. He very gradually got better and he had acute reactions to many foods which we cut out of his diet. It took 2 years before we saw nearly complete improvement. He was well until he started school, where he was in contact with a lot of airborne allergens. He had patches of eczema on his face which we were not at all worried about. It was minor.
However, Josh had quite a nasty reaction to a new food I introduced and he had an emergency visit to the doctors. We did not know it was an allergic reaction at the time and the doctors were more concerned about treating his eczema than his asthma and stomach cramping. My husband flatly refused steroid creams and the doctor alerted health visitors to check us out. It scared both me and my husband enough that we gave in to the steroid creams. His skin got progressively worse until January, when we decided that enough was enough. I am so angry that we were bullied into using steroid creams again and he has had to suffer so badly. At least we know now.
On to the photos! This is Josh at the beginning of this month. His skin has had a few flares but the itching has declined a little.
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Take Care!
We have the exact same situation. Two years ago we experienced, unknowingly, a withdrawal phase with our daughter, and now that I see pictures of others I realize that's exactly what was going on! We thought she had an autoimmune disease or something, since her flesh was falling off! That enrages me that you were bullied! Wow. How can they even do something like that? I broke the news of our plan to my mother last night (we are only on day three) and she voiced her concern about that-- what if a doctor turned us in for neglect! I thought that was absurd that she asked but after reading this, I'm terrified and angry that it's even a possibility!
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